The Federation of European Scleroderma Associations (FESCA) aisbl. was founded in 2007 and is registered as a charity in Belgium, with a Board drawn from five different EU countries. It is an umbrella group of 23 national scleroderma patient support-and-advocacy organisations in 18 European countries.
Our mission is to provide information to people with scleroderma, increase awareness on an international level, and advocate for equitable treatments for people with scleroderma throughout Europe.
Scleroderma is a rare disease, and effective support, advocacy, and research requires embracing a wide consortium of patients. As an EU organisation in search of equitable access to treatments for patients across Europe, FESCA works to unify and promote the goals of its 23 organisations in 18 countries.
Scleroderma is a highly variable disease, its very name an umbrella term for many different manifestations of connective tissue and vascular disorder. Treatments, and access to them, vary across the EU due to a lack of awareness, different medical systems, poor social services support, isolation from suitable specialists, and a lack of information within the medical community regarding which medications are available.
FESCA aisbl. established European Scleroderma Day immediately upon its foundation and we consider it a crucial part of our mission to increase awareness. FESCA aisbl. acts as a central force funding the national campaigns for what is now World Scleroderma Day on June 29 reimbursing the campaign costs of the 18 nations to an equal extent, and increasing awareness exponentially. Early diagnosis is critical to successful treatment, and only higher awareness of the early symptoms of SSc can lead to earlier diagnosis. These early symptoms can be readily recognised by the general population and by GPs, but the pieces of the puzzle are rarely put together to create the diagnosis of SSc. Spreading information is key.
The Systemic Sclerosis World Congress is of unique importance to patients and health professionals in sharing information, spreading awareness, and developing networks. Such networks are of incomparable value when they exist among patients, but are also extremely valuable in developing a focus for the patient and doctor activity essential to research. Workshops at the congress put patients and doctors into direct one-to-one contact so that doctors unfamiliar with the progression of this rare progressive disease can experience the breadth of its impact on a large number of people, perhaps for the first time.
World Scleroderma Day
Having a disease that nobody has heard of is a lonely business. When even the doctors cannot recognise it, or tell you what is going to happen, it is lonelier still. So World Scleroderma Day was created to tell people, including the medical community, what it means to have this disabling disease. June 29 is a day to recognise the bravery of those who live with scleroderma, and to demand equal treatment and equal care for people with scleroderma across Europe.
Every year, on June 29, we campaign for a world in which equal rights, treatments, and care are offered to people with scleroderma, and in which such rare diseases are not forgotten, but afforded the consideration and attention of other more common diseases.